Sarah Tee

Just letting off some steam. My specialist keeps having discussions with me about particular medications, leading me to assume that he can prescribe them, but then, after multiple discussions, he will suddenly reveal that he cannot prescribe that medication, and act like I am weird for asking about it. For example, at the last two appointments we discussed using sleeping tablets to temporarily deal with the insomnia side effects of calcium channel blockers. I raised it two appointments ago, and we agreed it wasn’t ideal to “pile drugs on” in this way. Then I failed to tolerate another class of vasodilators. So we decided to to try calcium channel blockers again (a different one with different pharmacokinetics). This time *he* brought up the possibility of using sleeping tablets if needed, and seemed to have reconsidered it in the light of my dwindling options. So I try the new calcium channel blocker, feel better, but get insomnia after a week, and contact him to ask about sleeping tablets. ”I don’t prescribe sleeping tablets or any potentially addictive medications.” Well why didn’t you blimmin’ say so? Where did you think I was going to get them from? No GP is going to prescribe sleeping tablets to deal with side effects from a medication prescribed by a specialist, especially when the patient has something unusual such as dysautonomia. If I had known he couldn’t prescribe sleeping tablets to potentially get me over the hump of insomnia with a calcium channel blocker, I would have gone to a different medication this month. Also now my sleep pattern is disrupted and I have no way of getting back on track. This is not the first time he has done this either. He led me down the garden path about octreotide as well (luckily it turns out octreotide wouldn’t work for me, but at the time I didn’t know it and was extremely disappointed). I should have learned from this that I have to interrogate him about everything he says, I suppose. Or develop mind-reading powers! Short version: I have wasted my money, the government’s money (subsidy), a bottle of pills, and two weeks of my time because my specialist cannot communicate the most basic of information, like the fact that he can’t prescribe sleeping tablets, even though we discussed it twice.

@MaineDoug, I’m so sorry to hear that. Going out for tests or appointments is so exhausting.

@JennKay, I’m sorry to hear that. I’m “lucky” in that my symptoms are all daytime, so I can sleep reasonably well. However, I do find sleep unrefreshing, and generally feel like h*ll when I wake up. I recently read that researchers have discovered marked daily patterns in blood samples taken from patients with rheumatoid arthritis. The researchers speculated that other immune-related conditions may also have a daily cycle of inflammatory markers or “bad antibodies” that cause symptoms to follow a daily pattern.

I wonder if this lecture might have some useful info: https://vimeo.com/272750685 It is looking at POTS, but the info might apply to other types of dysautonomia as well. ”Dr. Mitch Miglis and Dr. Fiona Barwick from Stanford University presented on sleep disorders in POTS during the May 2018 Dysautonomia International Webinar.” I’m afraid it’s been a while since I watched it, and I can’t remember whether it touches on nighttime respiration rates.

@MaineDoug, that is great news!

Summary article: https://www.sciencedaily.com/releases/2009/09/090922195414.htm The lead scientist speculates that, as they have shown that the vestibular system can affect cerebral blood flow in healthy people, perhaps vestibular dysfunction can cause problems with cerebral blood flow. Abstract with link to full article (available for free): https://pubmed.ncbi.nlm.nih.gov/19775430/ My speculation: Perhaps this could explain why vestibular therapy helps some people with their orthostatic intolerance symptoms. It could also explain why vestibular problems have been noted as a comorbidity in people with orthostatic syndromes, i.e. that the two occur together more than would be expected by chance.

The joint pain in my hands is definitely reduced. This was not a severe problem, as it only showed up when doing weight-bearing exercise (e.g. push-ups) or when I did a lot of work with my hands (e.g. long day of gardening or cleaning). Not that I’ve been doing any of those activities lately, but before my OI got bad I noticed my hands would hurt when I attempted it. I don’t think I ever even mentioned the pain to a doctor until recently when I finally got referred to a rheumatologist and made sure to think of everything that could be rheumatological. I have had swollen PIP joints for many years, but again not painful. Just means I can’t wear rings from when I was younger. I also wonder about my hands overall, as, although my hands are average size, I can never get “one size” bracelets on. So I can now theoretically do push-ups or hand-stands. Ha! When I was younger and healthier and might have comtemplated such a thing, my hands stopped me. Now my hands are much better but I’m exhausted and out of shape from years of OI. The gods have an interesting sense of humour …

@MaineDoug, that is interesting to know. In another couple of months, I will ask my specialists how they feel about sending a general enquiry about medications and auto-immune treatments.

@Sea otter, that sounds similar to Australia. A lot of treatment is free, or subsidised, but there can be a long wait. I hope you can manage to get the additional tests you need.

I noticed that researchers at the Karolinska Institute in Sweden will be measuring blood volume (among many other variables) in a study on exercise intolerance in long COVID, and it looks like they will be using the Detalo Health device: https://clinicaltrials.gov/study/NCT05445830?term=blood volume rebreathing&page=5&rank=44 I hope this will improve the understanding of exercise intolerance for all of us who suffer from it.

Thanks, @MikeO! I think I am past the worst of the initial side effects. Now to just slog on for another 2.5 months and fingers crossed it does something!

@Sea otter, I struggle with my brain too. If a doctor (or any person e.g. bank clerk, government employee) talks to me in a helpful way, I am usually okay. But if they start saying odd or unfounded things, my brain freezes. It’s an awful feeling. I’m sorry you haven’t had any success with treatments so far. It’s really hard to get a diagnosis but then not be able to make progress with treatment. I live in Australia, and testing and treatment options here are limited. I know it’s not always easy for folks in the US to access the testing and treatments they need, but at least they know that they exist. I find myself daydreaming about winning the lottery and flying to the US for treatment!

@Pistol, I’m glad it helped with the joint pain and that it didn’t come back. Funnily enough, I think it may be helping me with some joint pain in my hands that dates back about 20 years, to the same time my OI symptoms started. The muscle aches that seemed to be a side effect have settled down again. I’ve made it to two weeks – yay!

@Caterpilly, hmm, I haven’t heard anything that suggests Dr Novak’s ideas on cerebral hypoperfusion are in any doubt. His research in this area dates back some years, and there have been other big names working before him on the same theme that are referenced in his articles. Funnily enough, a group of South Korean researchers published a study that identifies the same disorder as OCHOS, except calls it OINH. Their study and Dr Novak’s OCHOS one both came out in 2016. I don’t know whose came out first, or if they knew about each other. So in a way they replicated each other’s findings of the condition (although not the studies because the methods weren’t identical). Anyway, I dare say they’ll all “duke it out” in the journal pages if there is anything different to say 🙂

@Pistol, may I ask, did you take a loading dose when you started Plaquenil?

@MikeO, yes, plenty of fluids. I have had aching leg muscles as a side effect from several medications. I think I’m prone to it! On the plus side, no nausea or vomiting. Phew!

The muscle aches are bothering me a bit. If it wasn’t summer, and I didn’t have heat intolerance, I would have a warm bath. It’s not even a fortnight yet – I thought it was well over.

I’m finding it a bit hard to have four doses a day separated out enough and accompanied by a decent amount of food. The last one is the problem. I don’t want to be eating near bedtime. So I tried having 50mg with breakfast, 50mg with lunch, and 100mg with dinner. But this wasn’t successful. 100mg at once made me feel blah. Back to four doses a day. Will try to get up early to move everything forward in the day. I’ll try the 100mg at dinner again in a few weeks.

@Pistol, in my case, the cerebral arteries are constricting and stopping the blood getting to my head due to something in the immune system interfering with the normal vasoconstriction/vasodilation process. At least, that’s what Dr Novak has hypothesised. And that’s why vasodilators make me feel better. It’s also why I feel better on steroids and have a partial remission afterwards – the steroids damp down my immune sysytem so it is no longer interfering with the normal blood flow to the brain. Funnily enough, lying upside down improves the blood flow temporarily, maybe just by forcing more blood through. So maybe giving me a lot of IV fluids would end up forcing blood through just because I was hypervolemic (but of course no-one would do that because it is dangerous). It would be interesting for me to have a tilt table test and get tilted the other way, head down, for a minute or two, while having the Doppler ultrasound. I understand that other people have problems with cerebral blood flow for all sorts of reasons. Bodies are complicated. I apologise for giving the impression I was describing what happens in everyone with low cerebral blood flow. My explanation is only applicable to hypertensive-type OCHOS, as described by Dr Novak and borne out by my personal experience with medications, infusions, etc. The fact that IV saline didn’t help me was just one clue gathered over two years leading up to me being diagnosed with OCHOS, and not responding to IV saline doesn’t mean you have OCHOS, because some people with OCHOS have low blood pressure and signs of hypovolemia, so they could well respond to IV saline. Other folks will of course have to go on their own odyssey to figure out what is happening (or have already been on it and can offer suggestions from their experience). Sorry for the confusion.

@Caterpilly, I’m so sorry to hear that Dr Blitshteyn wasn’t any help. What a disappointment. I apologise for bringing back an unpleasant memory for you. I wish I could wave a magic wand and introduce quality control over doctors. And also clone a few of the good ones. *** I didn’t get any benefit from IV fluids, which was a big puzzle at the time, but makes sense now that I know that my problem is my body restricting blood flow to my head rather than low blood volume. Some people with refractory POTS have had success with IV albumin. It ”sticks” better than saline and has a mild immunomodulatory effect. I have a long thread about it on here, with links. Just search “IV albumin”. It has to be ordered by a specialist, and has risks beyond those of saline because it is a blood product. It is reasonabley well established as a treatment in Canada, but not really anywhere else. I think it happened simply because one specialist there decided to try it and a few of his colleagues followed suit after seeing it was effective. I’d guess there are about 15 to 20 patients receiving it, many of them teenagers or in their early 20s.

Better day today. No muscle aches, almost no headache, no generally horrid feeling in afternoon. Feeling slightly overstuffed with cushioning foods (ha ha). Reading a bit about Plaquenil. Scientists don’t quite know how it works. Feel vaguely hopeful in that some of the things we know that it calms down seem to be related to abnormal vasoconstriction (and maybe vasodilation too). I cannot seem to get into reading this stuff and may have it completely wrong. A little learning … etc. etc. Has anyone written a book for the layperson on the immune system that makes it literature, rather than a jumble of letters and numbers? My dad reminded me that my Uncle Tom caught malaria while serving in the Far East after the war. My dad, the youngest brother, remembers him talking about it and sometimes being unwell after he returned to Scotland. I imagine he had to take quinine. I hope he didn’t suffer too badly.

@Caterpilly, my symptoms are not exactly linked to being upright. Mine run according to the time of day, and once they start, lying down doesn’t make a big difference. I do feel worse if I stand still while symptomatic, of course. (No headaches.) There is research into autoimmune diseases showing a daily pattern, so I just figure that’s what is happening with me. There has been some research on patients with chronic fatigue syndrome who have low cerebral blood flow showing that it did not resolve immediately after they were lowered down to flat again from tilt table testing. So although being upright is important, it obviously isn’t the only factor. I think many folks here feel unwell on waking or wake up during the night feeling unwell. I go through phases of feeling shocking when I wake up, or feeling okay until I eat. *** Change of topic: Have you ever managed to get IV saline, and did it help?

@MaineDoug, I hope you can get back to Humira soon.

@Caterpilly, maybe you could go on a waiting list to see Dr Novak. Even when you are ill and travel seems impossible, you never know how things will be down the line. He’s written a couple of articles on testing, which you can find on PubMed, and the department has something called “The Brigham Protocol”, which sounds like a 1960s spy novel. It’s discussed towards the end of this article: https://www.brighamhealthonamission.org/2019/06/03/expanded-autonomic-testing-helps-to-pinpoint-causes-of-orthostatic-intolerance It’s basically all your usual autonomic testing as done at a specialist lab with cerebral blood flow velocity (measured with Doppler ultrasound) and end-tidal CO2 added on to the tilt table testing. I don’t know that he is particularly into the immune side of things, but he would have colleagues to help, I am sure. Dr Tae Chung at Johns Hopkins and Dr Blair Grubb at the University of Toledo seem to be involved a lot in immune aspects. Dr Svetlana Blitshteyn also has an interest in that area, although she doesn’t take insurance and writes up a treatment plan that you need a local specialist to follow. (She does do telehealth.) I’m sure other folks can chime in on who or where might be good.

@MaineDoug, sounds like that saying “If you want something done, ask a busy person”. I am glad you have such a conscientious person on your team.